Abstract
Early-onset cancer patients, survivors and caregivers have unique needs in comparison to their older counterparts. As a result, they often turn to social media to find others with similar experiences. This study employs hermeneutic phenomenology to understand the unique needs of early-onset cancer patients and caregivers as they engage with communities related to their illness across different social media platforms. Drawing from such theories as uses and gratifications, context collapse, and aspirational self-presentation, this study shows how people engaging with social media communities related to early-onset cancer employ “affordances-in-practice,” choosing what to post based both on the technical affordances of each platform, and on the audience they imagine to be on each platform. We find that in addition to seeking information and social support, participants in early-onset cancer communities use social media to seek hope. This finding suggests a nuanced reconsideration of the existing dichotomy between online authenticity and the aspirational self on social media platforms like Instagram.
Introduction
In July 2021, author one, Dr. Jaigris Hodson, received the news nobody wants to hear, but is unfortunately all too common: “You have cancer.” A cancer diagnosis is a life-changing event, at any age, but even more so when it occurs before the age of 45. In Dr. Hodson’s words, In the moment of receiving a diagnosis of stage 3 cancer, it felt like I had the floor pulled out from under me. I was so very afraid that I was going to die, and I felt so alone. Despite living a life that was supposed to prevent disease—a non-smoker, vegetarian, gym rat, I was faced with a diagnosis of what they call “locally advanced” cancer. And most people around me had no idea how to react. It felt like my life, as I had known it, was over, and I guess in some ways, it was. Lost and searching for answers, I turned to online platforms. Searching Instagram for cancer-related hashtags, I started to find other young people experiencing the same cancer diagnosis as I had, and through them, more and more people. I would reach out, commenting on their posts, and later, sending direct messages of support, or questions. Through reaching out, I was eventually added to a WhatsApp group, where we all shared our stories and supported one another. The community I found there proved an invaluable resource for me as I progressed in my treatment, and helped me stay the course during the toughest moments. Once I had finished active treatment, I stopped to reflect on my experience, and realized how crucial social media had been in helping me through. As a researcher, I wondered if other people had similar experiences. That was the genesis of this study.
Incidents of cancer are increasing in people under the age of 45, a phenomenon known as early-onset cancer (Ugai et al., 2022). Young adults with cancer face unique challenges, such as disruptions to career or family plans, greater likelihood of mortality, and a lifetime of fears of recurrence (Young Adult Cancer Canada, 2022). Research suggests that as a subset of the cancer community, younger cancer patients may not have access to the support they need, since supports are more likely to be provided to meet the needs of the majority of cancer sufferers who are older (Smith et al., 2013). While support groups have long been part of cancer care (Taylor et al., 1986), they are not a one size fits all model. A group that works well for older cancer patients may not be right for younger ones (Smith et al., 2013). To meet their unique needs, many young people who experience a cancer diagnosis turn to social media.
This study examines the experiences of people who are part of early-onset cancer communities on social media. We use hermeneutic phenomenology to take a deep dive into the lived experiences of people in online cancer communities. Our participants imagine the composition and needs of their audiences on different platforms, differently, and tailor content to them to gratify their unique needs as people experiencing serious and life-threatening health issues. We find that our participants navigate context collapse using “affordances-in-practice” (Costa, 2018) to both offer and receive not only information or support from their cancer communities, but also hope. We begin this article with a review of the literature related to cancer and social media use, then we explore how uses and gratifications, context collapse, and authenticity can help us understand social media use in this context. Next, we introduce our methodology of hermeneutic phenomenology and explain how our own experiences navigating cancer as a patient, and as a support person, inform our analysis. Finally, we present and analyze our data to show the ways cancer communities on social media work with the affordances and demographics of each platform to construct hopeful spaces to connect with one another.
Literature Review
Early-Onset Cancer and Social Media
Social networking groups and other online cancer resources have shown promise for meeting the needs of younger cancer patients (Love et al., 2012), who rely on social connections for multiple types of support when they receive a cancer diagnosis (Hauken & Larsen, 2019). Social media has been studied as a source of support for young people who experience a cancer diagnosis (Lazard et al., 2021). It allows young people to participate in ways they feel comfortable, and on platforms they are already familiar with. Online groups provide opportunities for those impacted by cancer to obtain information, seek support, and connect with others who have similar experiences (Falisi et al., 2017), no matter where they are.
Research has shown that cancer-related social media can help provide information on prevention and screening and can also be a source of emotional, physical, or psychological support (Abramson et al., 2015). Support from groups on social networking sites can serve an important function in the health of cancer patients, since they can help to decrease stress levels, which, in turn, leads to a decrease in reported physical illness (Abramson et al., 2015). Social media has also been used by young adult cancer caregivers, who were able to use social platforms to access multiple types of support including emotional support (Warner et al., 2022). Although social media platforms can be a positive force in the life of a young person with a cancer diagnosis, they also bring a host of challenges for the cancer patient, including exposing them to misinformation (Rivera, 2020), trolling and harassment (Lazard et al., 2021), and compromising private health information (Grande et al., 2015).
While many studies outline the potential for social media to be (a) a strong sources of emotional support and information for people navigating a cancer diagnosis (Falisi et al., 2017; Warner et al., 2022), (b) a potential source of information from health-promoting organizations (Falisi et al., 2017), and (c) a way to increase well-being during and following cancer treatment (Stage et al., 2020), much of the literature has examined only online forums, or studied a single platform rather than examining the ways people who experience a cancer diagnosis are negotiating their experience upon different social platforms (Falisi et al., 2017). Furthermore, those studies that have interviewed young cancer patients, families, and caregivers about their social networks (Stage et al., 2020; Warner et al., 2022; or Hauken & Larsen, 2019, for example) have not employed methods such as hermeneutic phenomenology and so lack the reflexive context of lived experience in their analyses. Finally, TikTok as a platform with respect to cancer remains understudied, in part because it is relatively new compared to other platforms (Walsh-Buhi, 2020). This study addresses these gaps through methods that draw from lived experience to determine how people experiencing a cancer diagnosis are engaging with different social media platforms, and what needs these online communities meet for them. For this, we employ a uses and gratifications framework to make sense of reported differences between different social media platforms, and the role these platforms play in the lives of early-onset cancer patients.
Social Media Uses and Gratifications
People use different media to meet a variety of needs, and cancer patients are no exception. This is one reason why most people will spend time using multiple social media platforms simultaneously instead of replacing one with another as they arrive on the scene (Quan-Haase & Young, 2010). Importantly, social media platforms tend to offer similar gratifications for people; they all provide some degree of social connectivity, community, and information sharing. However, the degree to which each platform supports social connection or information sharing varies, and the type of social support or information available differs depending on the platform’s “affordances,” or what the design of the platform makes it possible for people to do (Wellman et al., 2003). Uses and gratifications are only one piece of the puzzle explaining why people use platforms the way they do. McCay-Peet and Quan-Haase (2016) developed a model which understands social platform engagement as attributable to six overlapping elements including (a) uses and gratifications; (b) the presentation of self, which is the articulation of personal identity via an online profile; (c) action and participation, which is based on the kinds of contributions a platform allows users to make; (d) positive experiences, which includes any experience on the platform that makes people feel good, or helps them achieve a flow state; (e) usage and activity counts, which include measures of likes, follows or other engagement metrics visible to the user; and finally, (f) social context, or the network of social connections that are available to the users on each site (i.e., LinkedIn facilitates professional social networks, Facebook tends to skew older, and TikTok often exposes users to a broad and global audience) (Mellon & Prosser, 2017). Based on this model, we would expect that cancer patients likely choose to engage with different social media platforms because they desire specific experiences, receive certain feedback, or are able to connect with different supports using different platforms. That is, one might assume that the informational needs or support needs of cancer patients might be better met by some platforms than others.
When users present themselves to others through social media posts, the technical affordances of the platforms shape how people present themselves. For example, on Instagram, people use both the image and the caption to perform an identity to their community (Baker & Walsh, 2018). Social identity, whether on- or offline is not fixed or stable, and people adapt their performance of self according to context (Kietzmann et al., 2012). In addition, the affordances of a platform, which includes the perceived audience on the platform can influence whether people have a negative or positive experience on the platform (Masciantonio et al., 2021). For example, during COVID-19, survey data reported in PLoS One showed that people are more likely to have an experience that negatively impacts well-being on Facebook, and one that positively impacts well-being on Instagram, while TikTok experiences were mainly neutral (Masciantonio et al., 2021). Both online and offline, people present themselves according to what they think others expect (Zhao et al., 2013). These practices of self-presentation are complicated by a diagnosis such as cancer, as people can open themselves up to stigmatization if they present the cancer-related aspects of their identity to the wrong audience (Knapp et al., 2014). When a presentation intended for one audience reaches an unintended audience, social disruption can ensue (Abril et al., 2012)—a phenomenon known as context collapse.
Context Collapse
Context collapse occurs when social media platforms collapse different communities into one single community. The concept has been developed by such authors as Marvin (2013), Marwick and boyd (2011), Marwick and Ellison (2012), and Vitak (2012), among others. According to this theory, on social media platforms users adopt diverse strategies of selective self-presentation, adapting their performance of self based upon whom they imagine the audience is and what their expectations are (Vitak, 2012). Selective self-presentation means that the technological affordances of a platform like Facebook, TikTok, or Instagram intersect with the goals and needs of users, something Costa (2018) terms “affordances-in-practice.” Costa (2018) found that among social media users in Turkey, the use of privacy settings across different social media platforms was a key tactic for keeping different communities separate. This shows that platforms are not fully deterministic of user actions. While platforms may bring people together indiscriminately, this does not mean that people are helpless in the face of platform design. They use platform affordances in unexpected or unintended ways, or “affordances-in-practice” (Costa, 2018) to resist the collapse of distinct contexts and their audiences.
Despite users’ best efforts to manage different audiences on each platform, context collapse can complicate the experience of being part of an online community by increasing tension, blurring personal and professional boundaries, and setting people up for embarrassing or emotionally risky situations (Brandtzaeg & Lüders, 2018). Furthermore, social media platforms don’t merely collapse contexts where social interaction occurs, they also often collapse the past and present into one single social media feed (Brandtzaeg & Lüders, 2018). When this occurs, users’ sense of self can be affected as people try to reconcile past and easily searchable expressions of identity with current expressions of identity which may no longer align with a past self. Of course, most social media algorithms prioritize or elevate content that is engaging, with a high emotional valence or high levels of novelty (Lischka, 2018). This means that past content which contains high levels of emotion or past content that is surprising, such as a post from the Day 1 was diagnosed with cancer, will be more likely to resurface than banal content.
Davis and Jurgenson (2014) expand on context collapse by introducing the concepts of context collision and context collusion. Context collusions occur when people invite others from different contexts to come together, for example, as occurs at a wedding or retirement party. Context collusion happens frequently on social media as users add friends and followers from different contexts quite deliberately. Intentionally extending one’s network in this way is often seen as a net positive for users, as it creates new opportunities for creativity, innovation, and even professional advancement (Papacharissi, 2009; Rainie & Wellman, 2012). Context collision, however, is the inadvertent bringing together of people from different contexts (Davis & Jurgenson, 2014). The negative outcomes of context collapse are more likely to occur during context collision when the user expects a boundary that is then transgressed. In this way, the imagined audience of a platform (Marwick & boyd, 2011) informs the user’s needs or expectations of the platform, and determines whether an individual instance of context collapse counts as collusion or collision. The imagined audience also helps people negotiate how much of themselves to reveal to others online without risking social exclusion or ridicule, which is especially important during times of stress, such as, for example, during cancer diagnosis, treatment, or caregiving.
Social Media Versus Real Life
The aspirational aesthetic and performative culture of social media, and Instagram in particular, is well acknowledged in the literature. Deeb-Swihart et al. (2017) suggest that people use Instagram to present their lives as effortlessly happy and positive as possible, even when portraying themselves in mundane situations like in the car or at the gym. To do so, users sometimes create multiple accounts on the same platform. Kang and Wei (2020) detail how users on Instagram will create “Rinsta,” or real Instagram profiles which they use to post content that makes them look good, and “Finsta,” or fake Instagram profiles which they use to post content that is less flattering. Finsta accounts, in this case, are used to bond with close friends rather than to present oneself to a broader audience. Alice Marwick (2013, 2015) offers the concept of “aspirational production” to describe how Instagram users perform a more stylized image of themselves and their lives. In the tradition of aspirational consumption, where consumers don themselves in luxury brands to convey an elevated social and economic status to others, aspirational production on social media platforms involves cultivating a high-status self-image online. Aspirational production seeks to portray an idealized life and highly sought after reality. Deploying the related notion of “aspirational labour,” Brooke Erin Duffy’s (2015, 2017) work shows how aspiring creative professional invest many unpaid hours of work into cultivating the perception of themselves as successful in the hope that doing might actually lead to a career.
This culture of performative aspiration has been rightly critiqued for a variety of reasons. In the context of the “Instafamous,” Marwick (2015) challenges this performative practice for how it reinscribes the traditional hierarchies of fame and power that privilege the white, thin, heteronormative, and able-bodied. Savolainen et al. (2022) further demonstrate how Instagram engenders a decidedly agreeable, positive, and performative version of political engagement, one that foregrounds individualized self-expression, and which cannot accommodate difficult discussions or movement building. Others point out that aspirational self-presentations tend to conceal the intentionality of this performance (Fiers, 2020), obscuring the time, effort, and capital involved in producing this image and the systemic barriers that prohibit some from accessing its benefits (Duffy & Hund, 2015).
Although self-presentational practices that cultivate an idealized self-image are widely practiced, media scholars have also underscored that social media cultures of production and consumption tend to valorize the notion of “authenticity” (Abidin, 2018; Cunningham & Craig, 2017; Duffy, 2015; McRae, 2017). As a structuring discourse, authenticity dictates that social media users present a version of themselves that is “true” to who they are, expressing themselves in a way that aligns with their internal thoughts and moods, and that they are honest and transparent about their lives and experiences. In this sense, the performance of ideal selfhood captured in the notion of “aspirational production” (Marwick, 2013) needs to be held in delicate balance with the “real.” Thus, posting on social media means striking a balance between aspiration and reality and constantly re-evaluating that balance across different platforms something that is of great importance for people who are experiencing a devastating diagnosis and seeking out community for that diagnosis while trying to avoid stigmatization.
Methods and Methodology
For this study, we employed hermeneutic phenomenology to better understand the experience of using social media tools as someone who has either experienced early-onset cancer (defined as cancer that occurs in a person prior to the age of 45), or who are caregivers of early-onset cancer patients. Hermeneutic phenomenology is concerned with the experience of life as it is lived by the research participants (Laverty, 2003). Importantly, hermeneutic phenomenology takes into account not just the lived experience of research participants as told by them, but also the lived experiences of the research team via the analysis of the data. For us, employing this method allowed us to engage with the interview data in a deeper way. This is because our own experiences offer us insight into the lives of people impacted by a cancer diagnosis. The primary author of this study, Jaigris Hodson was themselves an early-onset cancer patient during the COVID-19 pandemic, an experience which led to the idea for this research. The second author of this study, Victoria O’Meara, worked closely with the primary author during their cancer treatment, and was present for all stages of treatment and post-treatment. Thus, the inclusion of the research team’s life experience facilitated a deeper understanding of the data. In fact, we suspect that much of our analysis here would not have been possible without the added insights offered through our own lived experiences.
In conducting this study, we first searched for people who posted about cancer on Instagram and TikTok, because based on our own experiences of cancer, and the demographics of these platforms in Canada (Mai & Gruzd, 2022), these two sites were most relevant for the early-onset cancer community. We interviewed 12 participants using a semi-structured interview format. Interviews lasted approximately 1 hr. We started with people in the cancer communities known to us, and then searched outward from there. To generate a list of content creators to contact as potential study participants, we employed the following criteria:
The user regularly produces cancer-related content.
They interact with other users about cancer-related topics, responding to comments on their posts and answering questions from followers.
They have at least 1,000 followers on either Instagram or TikTok. This number was chosen because such a quantity ensures that invited participants are creating content for an online audience that extends beyond their personal network of connections.
From these criteria, we created a list of 48 cancer-related accounts to reach out to for interviews. We interviewed 12 participants using semi-structured interviews, stopping when data saturation was achieved, and no further coding or new additional information was attained (following Guest et al., 2006). The participant with the lowest number of social media followers had 1,600 followers, and the participant with the highest number of followers had over 170,000 followers. Eleven of our participants identified as women and one identified as a man.
For this study, following the lead of Suddick et al. (2020) we gathered data via hermeneutic interviewing. Drawing on our own experiences with cancer, we were able to enter into dialogue with participants to understand the meanings they applied to their use of social media related to cancer, and their experiences of the communities that formed on social media around cancer. Participants were able to tell their stories, answering questions with minimal interruptions, with the researchers summing up, probing further, and checking in both during and following the interviews to ensure understanding was achieved.
The analysis also followed Suddick et al.’s (2020) research. As we reflected on the interviews through the process of relistening, checking transcripts, and reading the transcripts, both authors would check in with each other regularly to reflect on their understandings of the experiences discussed by participants, comparing these with their own lived experiences. Once individual accounts were understood by the researchers, we aimed to understand the whole—seeking to determine what was meaningful across all of the interview data. Here it was necessary for the researchers to process the data separately, take time to think, reflect, and consider concepts, then reconvene to discuss the insights that each had uncovered. Through this reflexive process, we were able to theme our interview data, and choose which interview texts to report in the findings below. This method encourages the research team to draw upon their own insight when analyzing the data. From a positivist perspective, the use of such a reflexive method that includes a personal lens may appear to bias the research findings. However, our use of the hermeneutic phenomenology process, as described by Suddick et al. (2020), is intended to assist researchers in avoiding personal biases by remaining conscious of one’s positionality in relation to the research object, while also using reflections on personal experience as data. This process is also known as bracketing (Wojnar & Swanson, 2007). In what follows, we present lightly edited participant quotes in their own words, so that we can deliver on the context and richness required from a study using this method. Presenting extended quotations as data is standard in hermeneutic phenomenology and invites the reader to see for themselves the experience of the research team and participants.
Findings
Our participants found community on social media and were active on multiple platforms. In seeking to meet their unique social and informational needs, their choices regarding which social media platforms to use and what to post on each relied on negotiations between the technical affordances of the platform, the uses and gratifications sought by each participant, and finally the audiences that they imagined were following them on each platform. By choosing what to post and where, participants were able to inscribe different contexts to different platforms depending on what they were aspiring to do with their cancer-related communication. However, our participants also noted key tensions between online expectations of authenticity, and their ability and desire to remain positive during the challenge of cancer treatment. We will cover each of these in turn, first considering the affordances, uses, and gratifications participants described, then detailing the ways our participants negotiated context with different imagined audiences, and, finally, illustrating the push and pull between complete authenticity and maintaining hope in social media cancer communities.
Affordances, Uses, and Gratifications
Our interviewees suggested that different platforms serve different gratifications relevant to their needs. They often articulated the difference between platforms in terms of the communities of people who populate them, rather than their specific technical affordances. For example, Kim
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told us, I started [my TikTok] when I was diagnosed with cancer. And that’s been my main platform really. And I definitely have a much bigger audience on TikTok than I do on Instagram. Instagram is mainly my friends and family, whereas TikTok is people from all over the world. So yeah, I tend to post more on TikTok than I do on Instagram. [. . .] I think that on TikTok it’s much easier to find what you’re looking for, if that makes sense? [. . .] So I knew that TikTok was a really big platform. And that’s why I decided to start posting about my experiences on TikTok.
Importantly for our participants, different platforms offered access to communities that they felt were more or less like them. As young cancer patients, they were often seeking out other young people with similar experiences. This meant that if a particular platform seemed to appeal more to an older community, our participants would move to other platforms where they could find people at a similar life stage, as when Frankie told us, At first, I was cross posting to Facebook, but you know, Facebook. I didn’t feel like that was [. . .] necessarily my target audience. Who’s on Facebook is usually the older population.
Participants told us about a desire to reach people with information about cancer such as screening, prevention, or treatment. For that, they would turn to platforms they felt allowed them to reach a larger audience, like Pat, who created videos on TikTok and YouTube: TikTok is more like, when I want to reach more people, I can inspire more people. I prefer to post my in-depth videos there. Or on YouTube.
Because our participants used multiple platforms, they also told us that they negotiated posting about their cancer on each. For example, Ashley was very mindful of the ways her posting behavior changed to fit the different platforms she used, and the ways the affordances of the platforms influenced how much she chose to post on them: On TikTok, you don’t get a ton of space to write. On Instagram, they’ve got very specific things they want you to do, or they’re gonna shadow ban you. So, I just think people give different kinds of information and different methods of information between the different platforms [. . .] If you try to take something you posted on Facebook, you could put that on Instagram. They’re run by the same people. And then if you try to put it on Twitter, you’re gonna have to cut it down to fit the character limit. And then if you want to put it on TikTok, you’re gonna have to dance about it. I don’t want to dance about cancer every day. Like that’s not what I’m doing. [laughs]
The data suggests that participants use various cues to decide what platform to post on, including the demographics of the platform generally, specific demographics of their followers (as they know them) and then finally the technical affordances of what the platforms do best. These three cues helped our participants reinscribe context-in-practice into the different platforms, as is illustrated in the next theme.
How Context Is Negotiated Across Platforms
Participants decided what to post on each platform based on their ideas of what the audience on each platform would be supportive of, or receptive to, and some responses reflect an awareness of affordances. Morgan, for example, told us that a private WhatsApp group is sometimes easier than more public platforms for seeking information and support because, [The WhatsApp group] gives people an option to jump into certain conversations, or just observe or just decide to opt out altogether [. . .] Okay, so for example, say, I messaged you on Instagram about something. If you’re not feeling like talking about it, it’s kind of that awkward direct thing. But when you’re in a group of 50 people, or what have you, you can just throw it out there, and chances are someone’s gonna respond or have some input or some support to offer, instead of having that pressure just on one person.
Interviewees were aware that sometimes posting about their cancer on specific sites brought their health information in contact with an unintended audience. They would, thus, hesitate to post on some sites, due to the connections they had previously formed on the platform, such as Kelly who told us: It takes a lot of courage to post bald and stuff and I feel like always being like, “Oh, the blonde girl,” on Instagram. It’s hard. I don’t think I’ve honestly fully met the courage to post on Instagram. Because I really know everyone there [. . .] So I think I will get to that point and be able to speak about it more openly, but I’ve been using TikTok as my main resource to reach the most amount of people now.
Our participants took an active role managing how they post to each platform depending on who they felt was engaging with their post. They indicated that they would post specific content to one platform but not another, and often their choices depended on their goals. For example, participants might use a different platform for advocacy than they did for more personal content, such as Pat, who told us, [There are] things I’ll post on TikTok, but not on Instagram [. . .] TikTok is mainly just like videos, right? And I’m not gonna, sometimes I do post my videos from TikTok on Instagram. But it’s easier to get views. Views and comments and the people you reach are going to be more on TikTok. If I make a video, I’d wanna put it on TikTok as opposed to Instagram. Instagram is more like pictures and updates on my health and stuff like that. [. . .], Instagram is more just personal.
Pat’s answer shows the ways that the main media forms prioritized by each platform (video, text, or image, long or short content) work alongside the imagined audience on each platform to guide what people choose to disclose. Blake also chose specific platforms for different forms of communication, always with the perception that her audience was different in these different spaces. She explained, Twitter can sometimes be the repository where I [just] say things. Like, I’m gonna say this, but I can’t take it back. So, I’m gonna just throw it over there on the Twitterverse. [Laughs]. Because I don’t want my Instagram and Facebook family to know I have these terrible thoughts!
Another affordance that makes a difference is the ability to control the type of content one is exposed to and who can see their posts. Interviewees appreciated the ability to curate their feed and followers on Instagram. They indicated that this helped them to create communities that could meet their needs as cancer patients or survivors, though they also told us that the ability to control their followers list introduced other limitations with regards to information sharing. Morgan mentioned, I really liked that on [Instagram] you can pick and choose who you follow and the content that you see. Because you can choose what you’re absorbing on a daily basis, rather than the Facebook groups which were . . . you scroll through the Facebook [group] and you have to see what everybody in there is posting. [. . .] And that is a frustration of mine in the Instagram world. It’s an echo chamber. If people are not following you, you’re not really getting out there. You know, I can advocate all I want, I can be a support system all I want. But you’re just speaking to the choir, you’re preaching to the choir.
Similarly, Taylor told us that while Instagram provides a connection that allows her to cultivate friendships, at the same time, she also feels her audience is limited: I feel like with [Instagram], that’s kind of where the community is. That’s where I’ve met friends that I’ve genuinely met in real life, and I get to meet up with all the time [. . .] But I’d also say that’s where my audience is quite niche. Like it’s people generally that are going through something similar [. . .] On TikTok, I’ll just post on there like random stuff. But I did one TikTok, when I first started using it. It was just literally being like, “this is what cancer looks like,” and then [the image is] me before, and then I’d be going through it [. . .] it went viral and got like 2.8 million views or something. It was kind of insane. With TikTok, I mean, people that see it can be just totally random. And I feel like it’s a good place for awareness, but it’s less, like, targeted.
Alex discussed how Twitter served as a professional network for her, where she was able to seek information from medical professionals, while Instagram was useful to reach new cancer patients and build her community: I love being able to follow conferences on [Twitter] and ask anybody anything, I could ask the head of surgery at Mass General, “could you send me a copy of the paper?” They say yes. Most people are nice. [. . .] And I can share stuff and really, really raise awareness on a much bigger level. But it’s more the medical professional field, I think. Twitter is mainly healthcare professionals. I think there are fewer patients on that. [. . .] Whereas Instagram became more about growing a community of breast cancer patients.
While participants attempted to manage their experience across different platforms by employing different strategies intended for different audiences, there were some communities they avoided altogether. This was mainly due to a need to avoid negative cancer-related content, as described in the next theme.
Looking for Hope
Participants had to negotiate tensions on social media platforms between performing and desiring authenticity in the cancer experience, while also trying to distance themselves from negative outcomes in images, videos and posts that would provoke fear and despair. Blake, for example, explained that she sought out positive representations on social media to generate a sense of optimism for herself and others going through cancer, [I was] just looking for a little bit of inspiration, reassurance, like wanting to see a black woman diagnosed with breast cancer as young as me, surviving, you know? I wanted to see someone who’s going through chemo and doing okay, or someone who’s five years out, 10 years out. [. . .] Since I could not find it, I just started to be what I was looking for.
Many participants associated a fearful experience with particular platforms. For example, Steph told us that the negative posts on a cancer-related Facebook group fueled her anxiety, I was very scared of that group. It was the worst outcomes. People were dying, they were depressed. I remained a member, but I muted it. [. . .] So I actually end up telling people who are newly diagnosed to kind of stay away from Facebook groups, because [. . .] you go on there, you’re not finding support, you’re just finding support for your anxiety, basically.
And Morgan had a similar experience with Facebook, stating: I went to Facebook. [. . .] And I found a few support groups [. . .]. I really found (and this is my personal experience, but I’ve also heard other people echo this sentiment) that it was a lot of negativity, a lot of really scary stuff that was being posted. I wasn’t really getting anything that I was looking for, as far as some kind of hope or positivity or anything like that. It actually kind of caused me to go into a depression, I was spiraling pretty hard. It’s really the darkest place I’ve ever been in my life.
Ashley told us that she ran into frightening content on Instagram when she’d use the search function to find others with cancer, which was a barrier for her to find community. Particularly in the middle of chemotherapy, which is difficult for anyone to endure, she felt the need to negotiate how she used the site, choosing between finding community and avoiding the negative or scary reality of later-stage cancer: I would try to find people kind of through Instagram, but then I would run into like metastasis or just really, really scary things. And I mean, I’m like on chemo cycle number three, and you see a mountain in front of you that you’re still actively climbing. Chemo is just so . . . it’s the tip of the iceberg. I mean, it’s a Titanic situation.
Janis, too, encountered content on Instagram that made her anxious, but her strategy to cope with the anxiety she felt involved creating the type of content that she wanted to see, The only stuff that I could find was really negative. It would just be somebody documenting on day one [. . .] chemo, “Here are all my side effects. I’ve been lying around in bed doing nothing.” So, I thought, “oh, I want to challenge that a little bit.” [. . .] I want to try to change that [scary negative] message. So, I started posting my exercise videos on Instagram.
Unlike Janis’ or Ashley’s experience, many of the people we interviewed saw Instagram as a community where they could avoid negativity. For example, Jordan told us, I definitely don’t advise Facebook groups. Like that is a whole other ball game. Honestly, it’s all just doom and gloom. And people can be very, very negative. It’s just not what you want to read. So, most of the groups that I joined when I was first being diagnosed, I was like, this is just not what I want to see. So yeah, I don’t know. I guess Instagram is probably where I see most cancer-related stories.
Similarly, Steph commented that she found the community on Instagram to be welcoming and inclusive What I love about [. . .] Instagram is I feel like, no matter what type of cancer you have, you’re invited, you’re welcomed. We all have universal experiences, rather than just being like, my whole page is about breast cancer. My whole page is about lymphoma. It’s just about the universal experience of having cancer.
Discussion
Affordances in Practice
Like the participants in Costa’s (2018) study, our participants created affordances-in-practice. They did this, not simply through the use of privacy settings (Costa, 2018), nor by having multiple Finsta and Rinsta accounts (Kang & Wei, 2020) but also by dipping into and out of different platforms, depending on the architecture and demographics on each platform. Engagement in cancer communities on various social media platforms is something that participants managed via deliberate strategies that we posit are well aligned with McCay-Peet and Quan-Haase’s (2016) social engagement model. Put simply, the ways our participants used different social platforms to connect with a community included:
uses and gratifications or what they wanted to get out of the exchange (information, connection, support, etc.). This was evident in the ways participants commented on what content they posted on which platforms.
the presentation of self, or the part of their experience with cancer that they wanted to share, and with whom. This was evident in the ways participants described their audiences on each platform.
action and participation, or what the platform architecture facilitated in terms of outreach, connection, or information. This was evident in participant comments about such features as the curation of their feeds.
positive experiences, which shows up in what platforms they choose to engage with or avoid. This was evident in discussions about avoiding cancer communities on Facebook, for example.
usage and activity counts, or the feedback they get when they post to different platforms about cancer. This was evident when participants discussed the audiences and audience feedback on each platform.
and finally, social context, or who they connect with on each platform. This was evident in participant descriptions of the kinds of people they were able to connect with on each platform.
By actively managing their self-presentation through multiple social media accounts, our participants made decisions about how to show up on each platform, presenting themselves according to the perceived expectations of their audience (Zhao et al., 2013). Through the interviews, it is clear that our participants used different platforms because of the varied affordances they offered (as in Quan-Haase & Young, 2010), while sometimes avoiding certain platforms altogether. By modifying their online behaviors around each of the six elements of social engagement, they could avoid many situations of context collapse, reinscribing context in a dynamic process between each individual, their community, and the distinct architecture of each platform.
Managing Context Collapse
Our data suggests that participants were conscious of the ways that social media collapse contexts, and that this could open them up to negative experiences (Abril et al., 2012; Knapp et al., 2014). To cope, they created their own boundaries in how they used different platforms, effectively creating new contexts in which they could feel comfortable. Participants appreciated the ability to curate their own experience of the cancer community on Instagram by being selective about who they follow and who follows them. This shows that they value affordances that allow them to avoid context collision (Davis & Jurgenson, 2014). The affordance of managing followers meant that our participants often thought of Instagram as a more friendly site—a place to connect with family and friends, or a place to forge new connections with others who have similar experiences. While they told us that they make decisions about what to post on which platform based, in part, on technical affordances (not unlike Baker & Walsh, 2018, for example), they also chose what to post based on whether they felt they had the capacity to reach a broader or narrower audience. Instagram and WhatsApp, for example, were identified as reaching a niche audience of semi-personal contacts, while TikTok, YouTube, and Facebook groups were considered more broadcast-like, reaching a broader audience. The result was that participants seemed less worried about the potential for context collisions on WhatsApp or Instagram than they were on TikTok, Facebook groups or YouTube. As such, they felt they could post more personal content on Instagram, in contrast with more general outreach content on the sites with a broader audience. In essence, our participants were aligned with Vitak’s (2012) finding in which people imagine their audience before posting, and then post what they think their audience expects, as a strategy for avoiding the negative consequences of context collapse.
Of course, some of the decisions about what to post and where to post it are unique to the individual with whom we spoke. For example, while many might describe Twitter as having a broad audience, Alex found herself connected there to people who worked in health care, which meant that for Alex, Twitter was a more niche platform than it might be for others. These findings suggest that it is the ability to curate one’s connections on social media that matters for ensuring a positive experience of context collusion, rather than the more challenging context collision, though the downside of this kind of curation is a diminished scale of visibility and impact, as many participants noted. Rather than trying to achieve all of their goals using a single platform, our participants navigated the tension between building community and ensuring reach for their cancer advocacy by using different accounts for different goals, and sometimes multiple accounts for each goal. Part of the decision-making process, when deciding what to post and where, included the decision of which platform(s) to avoid, and in this decision-making process, we see our participants’ desires to manage the impressions they make to their audiences.
Hope Seeking on Social Media
While various authors have highlighted the role of authenticity as a key organizing discourse that structures and disciplines social media cultures of production and consumption (Cunningham & Craig, 2017; McRae, 2017), our interview data shows that authentic self-presentation and interactivity has significant drawbacks in the online cancer community and must be held in delicate balance with the needs of users to maintain optimism and hope about the future. Rather than prioritizing the “real” above all else, the participants of this study often created and consumed content in unabashedly aspirational ways. For example, when Kelly told us that she hesitated to post bald photos to Instagram because she was known to her Instagram friends as “that girl,” with blonde hair, she was attempting to maintain her aspirational self-presentation. Kelly’s experience is aligned with the work by Deeb-Swihart et al. (2017), which supports the idea that Instagram content is often aspirational in nature. Many of our other participants explained that their preference for Instagram was because of this aspirational tone, which was felt to be more positive. The more positive Instagram content was often contrasted by participants with what they perceived to be negative content in Facebook groups. In a sense, our participants engaged in both aspirational content production and consumption. They preferred to avoid what was perceived as negative content, instead wanting to engage in content that offered hope. Although nobody directly indicated that they preferred aspirational, idealized, and less “real” or authentic content from others, our participants consistently and almost unanimously stated that they preferred to avoid content that depicted the more frightening or sad aspects of cancer. This is likely because a positive attitude is held up in the cancer community as something that can potentially help patients progress through difficult treatments (Liu et al., 2018). It could also be related to the fact that cancer survivors experience mental challenges that impact quality of life, as a result of diagnosis and treatment (Liska & Kolen, 2020). The experiences of negativity on platforms like Facebook described by this study’s participants mirror Masciantonio et al.’s (2021) findings related to positive, negative and neutral experiences of social media platforms, and it appears that early-onset cancer community members actively seek to avoid the more negative Facebook communities as a result. These practices of seeking out and producing positivity suggest a previously unexplored use of social media for people who experience cancer, that is, the use of social media as hope seeking technologies.
While the current literature recognizes that cancer patients and caregivers use social media to find or share information, to garner support, and to connect with others (Falisi et al., 2017), our interviews revealed an additional gratification, which we call hope seeking. Many interviewees aimed to perform a version of themselves that was positive and hopeful. Participants reflected that they wanted both to show others that they were doing ok, and to find content online that showed other cancer patients doing well, or at least, not experiencing some of the more frightening aspects of their disease. While they weren’t actively seeking out false versions of the cancer experience, they were engaging in curation and making decisions about what platforms to spend time on based on a desire to avoid negative cancer stories about progression, difficult side effects, or treatments that went wrong. In doing so, our participants engaged in a type of “aspirational labour” (Duffy, 2015, 2017), not in pursuit of future employment, but in pursuit of a healthy future life, a future beyond cancer. In this sense, a dichotomy between authentic and inauthentic forms of self-presentation doesn’t capture the nuance of how early-onset cancer community members perform the self and seek community online. Their efforts do not sit comfortably on a binary of fake or real, but reveal a dynamic negotiated authenticity of striving and struggling. Participants curated a hopeful online experience for themselves and others because they did not want to be reminded that the light at the end of the tunnel could be an oncoming train of metastasis or lifetime side effects. Too much negative content, even if an authentic representation of different users’ experiences, was undesirable for the participants in our study as it created anxiety and fear. This finding invites social media scholars to further problematize binary distinctions between aspirational and authentic self-presentation practices on social media. It also serves as an invitation to interrogate more deeply the important and varied purposes that aspirational content production and consumption serve in different contexts and disparate online communities. In this case, the more positive or aspirational authenticity cultivated on platforms such as Instagram is an important resource for people going through traumatic experiences like cancer treatment.
Conclusion
We end where we began, with a reflection by Dr. Hodson: When I first started searching cancer-related hashtags on my social platforms, I did not realize that I, too, was searching for hope. As we interviewed participants, I remembered the traumatic and overwhelming days early in my diagnosis. I thought I was searching for information, and in some ways I definitely was. I wanted to know what to expect from chemo or radiation or surgery, for example. But increasingly in my own social media use, I would turn away from content that seemed to dwell on the negative side effects, or expressed misery and fear. Instead, I looked to the cancer patients who were still making it to the gym, or the ones who had emerged from surgery with their cancer in remission. Upon conducting these interviews, and through the deep reflection required of this method, I realized that I too was a hope seeker. While information can come in many forms: academic articles, the websites of my local cancer centre, or medical sites like WebMD, social media was uniquely suited to meeting my need for hope. Now I try to be that person for the cancer patients and survivors who come after me. I didn’t want to hear the news that I had cancer—nobody does. But now that I’m in a different place, I want to be the person I needed when I first heard those words.
Cancer patients, survivors, and caregivers all need hope. For early-onset cancer patients, survivors, and caregivers, hope for a future beyond cancer is a necessary and powerful force to carry them through a gauntlet of punishing treatments. Communities of young cancer patients can provide this gratification when people experiencing cancer actively curate their online experiences to create affordances-in-practice. By understanding the platforms and their audiences, younger people who have experienced cancer create context collusions within their online cancer communities and attempt to avoid context collisions. They also negotiate their portrayal of self on social media platforms, so that they can both find and offer hope.
In this exploratory study, we interviewed 12 people from early-onset cancer communities, employing a reflexive phenomenological method to understand what it feels like to seek out a community online as someone who has experienced cancer at what is considered to be an unusually young age (defined by medical experts as <45 years). Through in-depth interviews, we learned that participants use a variety of different platforms based both on the affordances of those platforms and on the imagined audiences for each platform. The curation our participants engaged in was both a tool to reach followers and also an important strategy for coming to terms with their own experience of cancer (and sometimes included the choice to not engage at all). Overall, one common theme to all of our participants was hope seeking. Online communities were important sources of hope and positivity at a time when our participants felt the crushing weight of diagnosis with a possibly terminal illness.
While this article has uncovered important areas for consideration in the ongoing understanding of both cancer communication on social media and the interplay of authenticity and aspiration in social media cultures of production and consumption, we wish to speak to a few limitations of this exploratory work. First, while the method of hermeneutic phenomenology was an important choice for arriving at the depth of analysis into the lived experiences of cancer patients that we aimed to understand here, using this method correctly requires a small sample size with descriptive data and is thus unsuited to generalization. We intend to build on this work by developing survey questions from our data that we can test with a representative sample. We also hope that future survey work can illuminate why hope is such a profound gratification for people in the early-onset cancer community, and whether this has any relationship to gender, the size of one’s online following, or the experience of early-onset cancer itself. We also, as part of our interviews, asked our participants about misinformation and online harassment within their cancer communities. Those questions have yet to be analyzed and so will form the basis of future research.
The finding that hope is an important gratification for people in social media cancer communities has implications for patient support, the provision of online health information, and for health misinformation. By understanding hope as an important driver, health care providers and health communicators can adopt strategies to better reach those who need their help the most. Social media does so much more for people experiencing early-onset cancer than simply provide them with information or social support during treatment. It also provides, in important ways, the strength to push through, and that benefit is profound.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Government of Canada, Social Sciences and Humanities Research Council of Canada, Canada Research Chairs Program.
